Matching Tracksuits

Parkinson’s

Helping

Monday 19 July 2021

The Boy likes to help, so much so that it sometimes can get in the way. But often it is really sweet how he pitches in. Tonight, for example, he insisted on getting Papa’s evening water prepared, thickened with some magical mystery white powder that turns water into a pudding-like goop that’s easier for Papa to swallow and less risky as well. In the meantime, K was preparping Papa’s dinner: warm blueberry cobbler and ice cream. Soft, easy to chew, tasty — a perfect dinner.

E then excitedly asked if he could help Papa eat.

“Of course,” we said. “Just make sure you go slowly: it’s difficult for him to swallow at times.” And so he stood patiently by Papa’s bed and helped him eat.

Nothing brings Papa back more completely than his grandchildren. Sometimes, when I walk in and greet him, I get no response. He’s off somewhere, seeing something, hearing something — but not there. Then E can walk in right behind me and say, “Hey, Papa,” and he perks right up: “Hey, little buddy.”

Once Papa is ready for his night’s sleep, I headed out to walk the dog while the Boy and K played cards. Last night, it was chess with me.

And L? She’s fourteen — just a little too cool to spend too much time with the family. Plus, she was at work today: she needed some down time.

Moments

Saturday 17 July 2021

Papa’s existence when the meds that keep him calm and sedated changes from moment to moment: There are lucid moments when he is just like the Papa we all know and love, there are moments enveloped in hallucinations, and there are moments that seem to fall somewhere in between.

This is a lucid moment.

He occasionally smiles while hallucinating, and it’s such a mischievous little smile that I want to catch a photo of it. Tonight, he smiled that smile, a little kid’s smile when he’s gotten away with something and yet is still just nervous enough to realize that he might not have in fact gotten away with it. An “I know you know I did it, but please don’t tell on me” smile. I didn’t have a camera ready, though, so I went downstairs and got our good Nikon. I was telling Papa about that smile and how much I wanted to get a picture of that smile, so he smiled for me. It’s not the smile I’d initially wanted, but it was a smile of intent, a smile of purpose, a smile to fulfill a request. A smile that said, “I know I’m having a lot of problems following instructions when you ask me to open my mouth or to roll over. Right now, though, I can do exactly what you asked me to even if I’m not sure why you want me to. I trust you and will do it because I trust you.”

Those lucid moments are rare, and they are increasingly rare with each passing day. The hospice nurses all say that they have never seen anyone with Parkinson’s progress this quickly. Every day is literally a new normal. Yesterday it became clear that he could no longer eat solid food because he didn’t chew it. He kept it in his mouth sometimes, partially chewed it others, and every now and then chewed and swallowed, each motion of his jaw a supreme effort. Today we gave him only pureed food, and in the morning he did a good job with it, but in the evening, it was difficult to get him to open his mouth to eat. He no longer can draw liquid through a straw, and when he does get liquid in his mouth, he almost chokes on it, so we bought thickener and we spoon-feed him his thickened water to keep him hydrated. Today we also stopped giving him pills to swallow: they’re all ground up own, sprinkled on spoons of yogurt. What tomorrow will bring is a complete mystery.

This is a hallucination.

He pulls threads out of thin air. He talks to people who over his bed, who sneak behind his bed and hide, who stand on either side of his bed. Strangers come to visit him as well as friends. Nana comes often. “Hey, babe! Don’t you think it’s about time we get out of here?”

This is the picture I hesitate to put on here, but this is the reality he’s suffering now. This is the reality that leaves us shaking our heads wondering how much one poor man has to suffer. This is the reality that creates new habits: I walked out of the room today just as he started saying something. I paused for a moment, then realized he was talking to a hallucination. I didn’t respond. I just continued out.

These are the moments when he seems most vulnerable, too. The hallucinations don’t frighten him: he once said he saw a hangman standing by his bed with a noose, but other than that, the people who come to visit him seem relatively harmless. He’s restless, though: he’s always been a mannerly man, a gentleman, a problem solver, so he wants to respond to all the things he sees around him, deal with all the issues around him (the threads that hang endlessly over his bed, for instance). In the past (i.e., earlier this week), when he started talking to these hallucinations or pulling at the threads, we did as the nurses advised: we played along and asked the person he was talking to to leave or took that threads ourselves. “Don’t worry,” we’d then reassure him. “We asked him to leave. Did you hear? Did you see him leave? He just walked out the door.” Now, he doesn’t engage with us when we say those things. That change has come in the last 36 hours.

This is a mystery.

Not hallucinating, not engaging with us — just there. Remembering? We don’t know. This might disappear tomorrow because it only appeared a few days ago. The way things change, “normal” is a fluid concept that can change within one day.

This is the only thing that seems to help these days.

This is what I feel guilty about neglecting with Nana: I didn’t realize how little time we had left with her once she came back from rehab. I didn’t realize how quickly she could go. I didn’t take the time simply to sit with her and to talk to her as much as I could have or should have. And now, so much that we say to Papa just goes unacknowledged. Perhaps because he didn’t hear. Perhaps because he didn’t understand. Perhaps because he was busy talking to someone else. But there’s one thing he understands.

Night

Friday 16 July 2021

Night can be the most trying time with a Parkinson’s patient since the disease can throw all kinds of obstacles in the way of a simple night’s sleep. Of course, there are the hallucinations that plague one night and day without proper medication, and as the disease progresses, the dosage of that medicine needs to be constantly adjusted. With Papa and his lightning-fast deterioration, what was an adequate dose three or even two days ago no longer has the desired effect. So Papa can spend a lot of the night talking to his hallucinatory friends, reaching for hallucinated objects, and puzzling over imagined problems. It’s hard to go to sleep like that.

Parkinson’s also affects sleep: one of the 10 early symptoms of Parkinson’s is trouble sleeping.

And so some nights at eleven, when everyone should be in bed, Papa has been lying in bed for three hours yet he’s still talking to people who are not there, reaching for things not there, looking around the room at sights only in his mind, and in worst-case scenarios, trying to get out of bed — something that would be disastrous.

The frustration we all feel about this is ineffable.

Beds and Bars

Wednesday 14 July 2021

Getting out of bed is so simple an act that we do it without thinking. We might sometimes want to stay in bed a bit longer, but the act of slinging our feet off the bed and hoisting ourselves into a sitting position — we don’t give that much thought.

When I had my hernia surgery some six years ago, I realized how much we use our abdominal muscles to get out of bed, and because those muscles were terribly sore after surgery, I thought very much about getting out of bed. It was painful, and I wanted to get out of bed quickly to lessen the time my muscles burned, but the act of getting out of bed quickly made them hurt all the more. It was a lose-lose situation. The decision to get out of bed, then, was always a reluctant one.

On the other hand, every time I’ve overslept, I’ve kept out of bed in a single motion, and it’s a conscious act: “I’ve got to get out of the bed as fast as possible and into the shower as fast as possible so I can get dressed and bolt downstairs as fast as possible to grab something to shove down my throat as fast as possible so I can get to work as fast as possible.”

Other than that, I rarely think about getting out of bed. The physical act is simple, effortless, and without consideration of its simple significance, a significance that doesn’t appear as such until the ability to do so disappears.

In two or three weeks my father has gone from being semi-independent (such that we could leave him alone for stretches up to eight hours) to being completely bedridden. I don’t think he’s quite come to accept that fact or even completely understand it. There’s still hope in his mind that he will one day be walking again. I don’t think that’s the case; the doctors don’t think that’s the case; and deep down, he probably doesn’t think it’s the case. Several times a day he tries to get out of bed only for us to remind him that it’s not safe for him to get out of bed. He says things like, “I can’t wait until I get out of this bed and get back to normal.” He doesn’t realize that this new normal is just that, nor does he realize that tragically this new normal will only last for some period of time (months? weeks? days?) before the next dip, the next drop in his condition, the next “new normal.”

Every new normal makes the previous one look like a paradise. Every new normal reminds us all anew that no matter how trying and depressing for all of us involved, it’s only going to get more trying and more depressing. Every new normal makes the old one seem eons ago. Every new normal quickly begins to feel like it will always be normal, that it will stagnate. That it has stagnated. And then another dip. Another episode. Another new normal.

And the bed he’s in becomes his whole environment, his whole world, his prison.

How anyone could watch how this man is suffering mentally and emotionally and believe that the god he dedicated his life to, supported fiscally (so to speak), and was eternally devoted to would turn his back on him in his time of need — how anyone could think in such a situation that a god like that could exist, and if that god did exist, how it could be considered anything other than capricious and evil, I just don’t know. Belief gives hope, apologists claim. Yet it also gives despair. “What have I done to deserve this?” Dad has asked in his lucid moments. “Why won’t God do something after I’ve devoted my life to him?” Nana pleaded. For both of them, I think, it’s not a matter of “Why doesn’t God heal me so I can go back to my normal life” but something more basic: “Why is God allowing me to suffer like this instead of just letting me die peacefully in my sleep tonight? Why do I wake up day after day to this same prison?”

He remains, as far as I can tell, steadfast in his faith. “I know where I’m going” is his general demeanor, and that might give him some comfort. But I can’t help but think that perhaps that comfort is not worth the anguish it also brings.

In the meantime, we try to comfort him in those admittedly-rare moments of angst, keep him calm throughout the day, and help him take each day in his bed one moment at a time. I don’t know that there’s much more we could hope to do.

L playing in the grass league this evening

The Other Sister

Tuesday 13 July 2021

Papa grew up with six siblings: four sisters and two brothers. The first sibling to go was his youngest brother, who was killed in Vietnam in 1972. I’m named after him but never met him. It was about thirteen years before the next sibling passed, Papa’s older brother, who had cancer and died in the mid-eighties. And then there three and a half decades before another sibling passed, followed by another sibling just a year or two later.

And so now there are three of them: a younger sister, Aunt D, who visited Sunday, and the first-born of the entire group of seven, who visited today. Aunt Y doesn’t get out much, and the last time she was at our house was for Papa’s birthday, probably close to a decade ago. We all used to meet at Aunt D’s house for Thanksgiving, but the last time we did that must have been five or more years ago. The last time all three of them were together was at Nana’s funeral. What a sad thought that that might indeed be the last time the three surviving siblings are together. But I guess that’s the nature of reunions as we all get older.

A Visit from Family

Sunday 11 July 2021

Papa’s sister and her daughter came to visit Papa today.

Day 17: Spiders and Compressed Script

Wednesday 1 April 2020

We probably should have taken him seriously, but I think even he was joking. Papa’s handwriting has gotten more and more compressed over the last couple of years, becoming almost impossible to read.

“It’s probably a symptom of something,” he laughed. We laughed, too, because Papa likes to joke about growing old. We took it as a joke; he meant it was a joke. It wasn’t a joke — or it shouldn’t have been.

What would Papa have to write about now? Perhaps a description of the spider he was sure he saw in the corner of the room the other night. He called me in to take care of it.

“There, in the corner,” he said, pointing.

“What?”

“A spider.”

I looked closely — no spider. “It must have just been a shadow,” I said.

What is hallucinating spiders a symptom of? If you’d asked me before this afternoon, I would have suggested it was a symptom of listening to the Cure too much:

On candy stripe legs the Spiderman comes
Softly through the shadow of the evening sun
Stealing past the windows of the blissfully dead
Looking for the victim shivering in bed
Searching out fear in the gathering gloom and
Suddenly
A movement in the corner of the room
And there is nothing I can do
When I realize with fright
That the Spiderman is having me for dinner tonight

I listened to that song in high school more times than I care to mention — a favorite from a favorite album of 1989.

But that’s not what it was. Nothing so innocent.

Today, Papa went for a consultation with a neurologist. The unperceived symptoms combined with other issues (blood pressure jumps, moments of temporary near-paralysis as if someone hit a pause button, slight loss of balance, some tremors in the hands, memory issues — issues that have appeared in the last few weeks and sent us to the doctor for an answer) to give the doctor a diagnosis which, in his words, has a 95% probability of being accurate: Parkinson’s.

There is one other option, but we’re hoping for Parkinson’s, because option two has no treatment possibility at all. What an odd response: we’re crossing our fingers for Parkinson’s because Levodopa can make it manageable. The other possibility — well, I don’t even want to think about it. Luckily, the neurologist said most of the symptoms are more indicative of Parkinson’s. Especially the spiders. “The most common hallucination Parkinson’s patients have involve spiders,” he explained. Who knew? (Answer: a neurologist.)

Fortunately, we have caught it relatively early, and medications should be able to manage the symptoms and perhaps even slow things. Or not — PD is a different disease for every patient.

Papa is relieved to have a diagnosis. We all are. It’s no longer a mystery: these moments of paused movements, the balance difficulties, the memory issues are less depressing when they have a name and a treatment plan. We had a heartfelt “it could be worse” talk in the evening. It could be something truly devastating like Alzheimer’s (though I never feared it was). It could have all reached this point when Nana was still around, which would have absolutely broken her heart, filled her with guilt (“Why didn’t I see those things as symptoms?”), and wreaked her with anxiety and worry.

Not forever, though — when Papa was admitted for a surgery on his lung that ended up taking 2 lobes and leaving him in ICU for a week, she cried a lot at first but then went into full Nana mode and became a lioness protecting Papa, keeping track of treatments, medicines, shaving, and making sure the nurses were running a tight ship. That’s what Nana did: process her anxiety with tears and then become a fearless protector.

That’s our job now. I don’t know that we could do it as well as Nana, but we’ll do our best.